Is it me or am I really in a minefield?

Ok. So I've survived the Pouter Pigeon with Attitude (endo) and am up to 2 grains of Naturethroid because 1 & 1/2 was too low, blah blah. So I take the 1 1/2 in the morning about an hour at least before I chomp and, on going to bed, taking the other 1/2 grain (to give my adrenals enough T3 to kick-start the production of cortisol at some ungodly hour of the morning - before 3 - 5am (when I still quite often awaken anyway with racing heart and runaway anxiety ...?). Down to a fine art, eh? Yes? Nope.

Now I find that I sometimes lie there at night trying to get to sleep and, rather than getting a heart rate something just above end-game slow with ectopic beats every 2 to 3 languid thump on 1 & 1/2 grains a day (which is why I worked up to the 2 that Pigeon recommended), my heart is trying to emulate that of a racehorse at full gallop. Could it be the bowls of cornflakes with sugar and almond milk I'd eaten just before going to sleep? I mean, I have cleaned up my act - almond milk! Unsweetened, I'll have you know, so don't go on (ok - I did have a dessertspoonful of sugar with the cornflakes. And the cornflakes are as good as sugar anyway.) And I've cut out gluten as far as possible. Ok, I did have cornflakes ...

I do try. I only have bread when I'm so desperate for something quick and I can't face the sodden clackiness of another slice of Genius, toasted, cremated or just defrosted, once every blue moon. And I am trying to cut out sugar - I've bought the book and everything, although maybe reading the so**ing thing might help - along with the five about thyroid, and Paleo, good fats, bad fats, circadian rhythms (is that one about singing insects?), God and how to survive a narcissistic mother. I even cut out chocolate for weeks, but the call of the Flake is so strong so relapse is an inevitability.

I've drunk tea tasting like toffee, almonds, mold, soil and what I imagine pee to taste like in my quest for a milk-substitute. I've tried cheese that is manufactured from the stuff left over from the distillation of petrol from crude oil - you'd think that'd've given me a boost. I've tried reducing my carbs and trying to manage the carb storms that result, eating from a more varied vegetable palette - try finding a varied range of vegetables in the outermost hinterlands of Lancashire, I defy you, and using my Nutribuillet for anything else other than draping the teatowel over to air. And don't dare anyone mention Slimming World, Weight Watchers, Rosemary Conley, Paul McKenna or anyone else that makes billions out of fat misery - been there, done it ...

But I'm still half asleep when I'm not unconscious, fat as a barrel, legs that look like porridge-filled tights, stomach going the same way, arms that are two sizes bigger in tops than my already whopping bosoms, weak as a kitten, and blown away by the sense that I am sitting in the centre of a Big Bang explosion of knowledge about how to tackle this S**DING disorder, desperately hoping that someone will JUST TELL ME WHAT TO DO!

Got an appointment to see a "Rehabilitative Medicine" consultant who heads up the NHS ME/CFS clinic I've recently found, in Leigh. It's Lancashire, but I'm still holding out some hope.

Took 1 1/4 grains this morning and will take another 1/2 grain later - but when? Afternoon? Evening? 2am? Do I build back up or go straight back to 2 grains, split dose. Do I not increase back to 2 grains ... ???


32 Replies

  • Hi Schenks

    I'm sorry you are in a conundrum and you must be dizzy trying all the options.

    First, if your Endo reduced your NDT according to the TSH alone and if you were feeling not too bad before the decrease I would go back to that.

    Re diet, I haven't changed what I eat but have tried the 5:2 diet and I am happy with it. You only need to restrict what you eat on two days a week (whichever day you choose and you can always switch a day if you need to as long as its two days in 7) Its 500 cals per day for those two days. It is a big reduction to what we would normally consume but over those two days plus eating normally for the other five days, you have actually reduced around 3000 cals in the week. It would be a continuous way of eating whereas as it isn't a diet as such but a change in how we consume calories. I didn't find it too hard as next day I knew I could eat normally. I worked out beforehand what foods were low calorie.

  • Hi, shaws; thanks, as ever. The endo didn't reduce - yet. She increased, but has told me she will want to reduce in 6 months from the last appointment because the TSH ...

    5:2 - tried it. No can do. Haven't got the energy or mind-thing to be able to plan it, count it, work it ... Yes, I do sound pathetic and defeatist. Because I am. I think learned helplessness has taken over.

  • I hope you find your 'get up and go' somehow.Maybe when you are on the optimum of meds you need, not what the doctors surmise is the correct amount due to your TSH alone.

  • Thanks, kid.

  • I know how complex thyroid issues are and that if your thyroid is not being managed appropriately you will never feel well, but have you considered b12 injections just to try and get some energy back meanwhile?

  • My B12 levels, according to blood tests, are way up. Am i right in thinking that that might not mean I'm utilising it? And if I am, try telling my GP!

  • You are right - that is why i recommend self injecting. Ii did not mean involving your Nasty Health Service GP who would probably sooner give you anti depressants

    It is what i do, otherwise Arrogant Ignoramus (nhs gp) would be rationing me to a shot every 3 months.

    A private GP told me it doesn't matter how often you inject- if it isn't getting to the target cells, it won't have an affect and you will have chronic fatigue. This is why i sometimes inject weekly. I figure maybe the more i put in and the more frequently i do it, the greater the chance of it reaching the target cells.

  • My Darling shenks, at least you haven't lost your sense of humour!!! And that is so important.

    You know, I Don't think it's so much what you eat as when you eat it. And a bowlful of cornflakes (I quite like them, too) just before going to bed is bound to be a catastrophe! How are you going to digest it lying down? And what time is that, just be fore you go to bed? And how does that relate to your last dose of NDT? A bowlful of anything containing calcium should be four hours away from NDT.

    Your body needs to go into a state of fasting during the night - from about 9.0 pm to 8.0 am, if possible, although I know that isn't always possible. But a good few hours, at least. People Don't need to eat last thing at night to see them through the night. The body doesn't want food during the night - unless it'a about six weeks old.

    Forget the sugar, the odd spoonful of sugar isn't an issue - although you could try replacing processed white sugar with unprocessed cane sugar, or coconut flower sugar, or even maple syrup. And have you tried goat milk instead of cow milk (never know where to put the apostrophe, so I've left out the S)? A bit more expensive, but then, so is almond milk. And almonds are goitrogens, so large quantities aren't recommended.

    Corn flakes Don't contain gluten, but do you really need to cut out gluten? Do you have Hashi's? Have you tried three months total gluten-free to see if it helps? If it doesn't, then Don't torture yourself. But almost gluten-free isn't going to help anything. It's all or nothing.

    I cannot imagine that cheese made from crude oïl residue is good for anyone. But do you react badly to cheese? Cheese is not usually such a probelm as milk and yoghurt. I cannot tolerate cow milk, but cheese gives me no problems - and there's always goat cheese. Or sheep cheese.

    And I certainly wouldn't recommend Slimming World or any of that other c**p. And I Don't even think the 5:2 diet is going to help unless your T3 levels are opitmised. And that is what you should be working on at the moment. Increasing your dose until your T3 is up around the top of the range.

    It's not about calories - nothing to do with calories - but then not much is. Calories are necessary units of energy that you need to convert your T4 to T3, they are not evil little entities that make a bee-line for your hips. It's about nutrients. So, how are yours? Have you had them all tested? Are you supplementing deficiencies?

    I've been in your position, not long ago. But it was nothing to do with what I ate. In fact, no matter what I ate, I was starving to death! Yes, I nearly died of somehting or other in 2013. But I was huge! No-one would ever have guessed. But then, I took things into my own hands, and supplemented my own deficiencies, got onto the right dose of the right hormone replacement for me, and I've lost the weight - without ever counting a calorie or giving up things I want to eat. So, eat that chocolate, and enjoy. Just Don't eat it in the middle of the night!

    So, it sounds like what you should be eliminating are a poisonous mother and an avian endo. Neither of those are going to help you! They'll just make things worse. One by sapping your energy and your self-estime, the other by keeping you on too low a dose for your needs. Do not ever allow a doctor to lower your dose due to the TSH. I Don't care what you say to her, just Don't let her do it. It is idiotic at best and dangerous at worst. Just. Say. No!

    There! I've told you what to do! Does that feel better? lol :)

  • Dearest Goose4; sh**, sh** and sh**! Never thought of any of the first paragraph - what a nitwit! Told you I'm struggling. And I feel as though I'm six weeks old! You're right - I'm having nowt after dinner.

    Never thought of unprocessed cane sugar, forgot about maple syrup and never heard of coconut flower sugar, so will be adding those in (if I can find the latter in Lancashire, the new fracking centre of Europe).

    Last time I had it measured (March) and I was on 1 1/2 grains, TSH was <0.05 (0.3 - 5.0), serum free T4 was 11.1 (10.0 - 18.7 ... go figure!) ans free T3 was 3.8 (2.5 - 5.5); so I recall someone better able to think that I can right now that the T3 should be in the upper something or other and the T4 should be - somewhere else. But the Pouter Pigeon with Attitude has changed her feathers and told me in April that she will not allow me to continue to take the current 2 grains of NDT after a further 6 months because of my TSH levels and the consequent atrial fibrillations, heart attack and stroke I am heading for. She said I can be healed enough to go back on Levo! It would be funny if it wasn't so ... Anyway, found out where to order the Naturethroid from direct, if it ever comes back in stock.

    I'm taking (not as daily-daily as I should) B12, Vit D3 2500iu, zinc, magnesium, Co Q 10, Vit C 1000mg, selenium, Omega fish oils - the better one at the higher dose (can't remember if it's Omega 3 or 9), acidophilus bugs by the shedload and St John's Wort to keep my mood somewhere just above drowning, which causes hot flushes to break through the HRT which the doctor has so far forgotten to cancel, thank God or else I will end up with a waistline that would exert its own gravitational pull... I think that's it so far as I can recall from upstairs where the PC is.

    Gluten free is better for me - not tested for Hashi's but I had Grave's and subtotal thyroidectomy light years ago, so Pouter says it is so highly likely I have autoimmune problems as to be a given. I was tested properly many (oh so many) moos ago and wheat was a biggie, as were the nightshades, chicken of all things and practically everything that tastes nice.)

    Mater being exorcised over many years (now dead but not bl**dy gone) and endo likely to be told to sod off at £90 per 20 minutes. Nice work if you too can blag it. Licence to print and bu**er the Hippocratic Oath. Or should that be Oaf?.

    Yep - you told me, and yep - that does actually feel much better. How much do I owe you - you are worth ten of the endos I've seen over the bl**dy years! Going to try for an emoticon kiss, but won't hold my breath. Here goes ... :X

  • Lol, Shenks you haven't cracked the emoticon kiss :-D

  • Tut! Ovoid, dangly, hairy-ocks!

  • Well, I'll take the kiss as read! lol Don't know what that angry-looking face is supposed to be doing.

    You are paying the pouter £90 for 20 mins and SHE will not allow you??? I'd like to say a very rude word here, but I won't. You can take it as read! lol You could do a much better job on your own, so I hope the Naturethroid arrives soon! Sod the bloody TSH, your FT3 is down the drain! Has she ever heard of T3? The FT4 is fine, Don't worry about that, but you do need to get your T3 up because that is causing so many problems.

    Perhaps just a couple of tweaks to the supplement regime? A B12 complex, if you're not already taking it - preferably with methylfolate rather than folic acid. And some vit K2 with the D3, magnesium and zinc.

    OK, so gluten is out for you, if you feel better without it. Pity about the other things, though... Still, at least you can eat the chocolate! lol

    I do know what you mean about the mother. Yes, the effects go on for a long time. That's why I tried to be a wonderful mother to my three. But now, at 47, 43 and 41, they are reproaching me with things I'm sure I never said! So, you just can't win. I just comfort myself with the fact that I did the very best I could Under very dfficult circumstances. Because, unlike most women, I didn't marry a man that resembled my dad. I married one so like my mother they could have been cloned! OK, so I'm exaggerating a little bit there, but!

    Hypocratic Oaf! l like it! We should do a double act. Can you dance? xxx

  • Like a Fantasia hippo in a tutu! (Re: dancing.) You asking?

    The job of a mother is to ****-up the children, but only enough for them to want to find out who they really are, as opposed to being a total train wreck, like me. So if your kids feel they can reproach you, you've just about got it right. And how many times do we go for the blueprint from childhood when choosing as partner? Freud calls it 'repetition compulsion'. In the words of whatsisname, "We're all doomed!"

    I really want to try your suggestions for the supplements - please, any advice on where to get them?

    Going to try for the kiss again - the last one was the face pre-Movicol. here goes again ... 8O

  • Sigh. 8-O

  • Oh bloody hell ... :x

  • Noooooo .... er, :)

  • Sod it.

  • I used to be able to do a penguin, but I've forgotten now...

    Yes, I knew Freud would come into it somewhere... Just didn't know where. But, you're right, if they feel they can reproach me, I've probably done a good job. I'm proud of them, anyway. I think they're just slightly embarassed by me.

    So, remember, you can get just about anything on Amazon. In fact, one of my hobbies is finding out what you can't get on Amazon! And believe me, it's not much. Vit K2 is a doddle. But the B complex might be more difficult. Somewhere I have the name of one, I just have to find it... I'll get back to you on that!

  • OK, so this one is good :

    Or this one is quite good, too :

    I haven't tried either of them personally yet, because I've got a large pot to finish up, but one of those will be my next buy. :)

  • Bless you, my child! :<3

  • Hmmm. How the b*** h*** do you do a kiss?

  • xxx

  • Yes Shenks I agree with Grey goose and I have to say you made me laugh on a day I was not laughing at all. Thanks Rosie

  • Sorry Schenks didn't mean to sound heartless but you did make me laugh. Maybe a book my life with s***ing thyroid. Rosie

  • Not heartless at all. Glad to be a giggle!

  • Have you done an adrenal stress test, the saliva one? You see I had that awful waking thing going on, I thought it was menopause related because I then got raging hot flushes till about 7 so I went on HRT but that didn't sort it. Then my private guy I see added 2 x nutri adrenal to my prescription and I think that's what got rid of the night waking and hot flushes (which can be a sign of low cortisol). Now just to get rid of that additional stone I've put on since starting the HRT 3 months ago 😥 lets hope it doesn't hang around like the other weight gain has for the past 5 years...

  • Hi, Posh. Adrenal salivary test done in August last year. All within range except for DHEA was mean level = 0.57 (0.2 - 0.7) and DHEA/cortisol ratio = 1.86 (0.6 - 3.0). Not a clue what it means! but the DHEA level a.m. was 0.81 with an 'H' after it, and the secretory IgA was >1000, with an 'H' after it (118 - 641 being normal range, 130 - 471 being optimal.

    Not a clue what it means - wish I did! Who's your private guy, BDP?

  • on another group I saw some one refer to their arrogant endo as an endhole...

  • LOL!

  • Hi Schenks. I sympathise deeply. Only tiny bit of advice I can offer is unless you have a dairy problem stick to the full-fat milk. It's MUCH more satisfying and it already IS a low fat food. I believe it only has 4% fat - that's very low, you know. All the faddy milks will just make you feel like you are missing out, which you are. Also, full fat milk is naturally sweet so that appalling dessertspoonful of sugar can go. Try replacing it with ripe banana - bingo you have all the sugar you need, without actual sugar. So eat real food, in other words. Once you start down the substitute foods road - well, that way madness lies; I speak from long experience!

    But you really do need to lose that dessertspoonful of sugar. That's an awful lot, and that stuff WILL kill you. Whole milk's food - sugar is a pharmaceutical chemical.

  • Hi, Chancery - thanks for your reply. The weird thing is I KNOW this stuff! I've realised I've got lost in all the static - completely drowned in it and it has taken words from the wise - like yours - to remind me of what I've lost sight of, so it really helps to be just 'sat down' and taken through it again for what I already know and to learn the bits I didn't. It sets me off on the right path again - resets my compass, if you like. I do have a problem with dairy, sadly. I even tried the lactose-removed milk (full fat!) but I don't think I can get away with it.

    The sugar has gone again, and the 2lb put on has come off. Now for the rest of the 4 stone!!! But thanks again for taking the time and just jogging me along.

  • Ah, that's a shame, but if you can't eat dairy, you can't. No getting round that. But basically, if you stay off sugar and try and keep your foods as 'real' as possible, you'll do alright, providing you are not eating six meals a day or eating it off the ceramic equivalent of wagon wheels!

    One of the troubles is overeating and eating bad food has been normalised. You know, the 'little of what you fancy does you good' ideology. Yeah, but not at every meal! Unfortunately unscrupulous manufacturers shove the idea at us all the time, to eat desserts and cheer ourselves up or reward ourselves with sweet foods. It's EVERYWHERE. Advertising, TV, sides of buses, magazines, and it's a nightmare in shops. It gets so you think it's okay to eat rubbish 24/7 because 'everyone' is doing it'. Well, no, not really. The skinny folk pretty much give it a miss!

    I speak from long, bitter experience on this. I would make headway with diet then fall down by trying to 'normalise' sweet foods into my everyday eating. I would rationalise it along the lines of 'everybody else eats it, why can't I?' Well, basically, because it's really addictive and because you can't add two biscuits or a bar of chocolate onto every meal without getting fat, that's why.

    Took me a long, long, LONG time to learn how to genuinely take care of myself rather than pandering to every sweet tooth whim that came along. But it's a bit like the mafia - you're barely out before they suck you back in! You've just got to keep plugging away as best you can. Good luck with it all.

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